One of my biggest and most embarrassing fears when I got the prenatal diagnosis of Down syndrome was that I might not think my baby was cute. It seemed like a really stupid and superficial thing to worry about, especially in the face of the many other possible things that could go wrong, but regardless of how much I wanted to be bigger than that, it was a real fear of mine. It helped to see other people's pictures of their babies and children with Trisomy 21, but the fear did not subside until Benny was born. It was a great relief that not only did we find our baby cute, but so did everybody else. As it turns out, babies with Down syndrome are still babies. Adorable, wonderful, extremely cute babies. Recently a 2 year old girl with Down syndrome was featured in a Target ad and the ad went viral. It was that exciting to see a child with a disability featured in an advertisement. Soon there was a call out to parents of children with Trisomy 21 to support a social media campaign for more companies to include children with disabilities in their ads. I've decided to take part in this social media campaign because I realize now that the reason I was so afraid that my baby with Down syndrome wouldn't be cute was because I had grown up rarely seeing images of people with Down syndrome at all. This lack of inclusion contributes to ignorance and intolerance. With his red hair and blue eyes my son is already a genetic anomaly, setting him apart from 99% of the general population. With his extra chromosome, he is even more rare. The exact number of people living with Down syndrome in the world is not known, but it is again less than 1% of the population. Yet as rare as Down syndrome is, people with disabilities are the largest minority in the country, representing nearly 1 in 5 people. And the more visibility that people with disabilities have, the better the lives of all people with disabilities will be. And the better off the rest of us will be too. In the four short months that Benny has been in our lives he has illuminated how much joy and love people with disabilities bring into your life. This isn't something normally associated with disabilities, and I think it's an important fact that needs to be brought to light. Shortly before his heart surgery our friend, the wonderful photographer Joel Peterson, came and took pictures of Benny for us. These pictures really capture just how cute Benny is. The hard part now is deciding which picture to post on social media, and which company to target with my #IMREADY #15in2015 message. I hope other families with children that have disabilities of all kinds will join us in spreading the message. To be a part of the campaign post a picture on social media. Use a caption like this: “Hey #GapKids #IMREADY for change. We want YOU to include models with disabilities in 2015. We want YOU to be part of the #15in2015!” #Changingthefaceofbeauty #DSDN" Here's to celebrating the new face of 2015, a diverse one!
2 Comments
We made it! They gave us the good news this morning that we were free to go home. We're home and so happy to be here. After a rough night last night we are so happy to hear that things are looking good for going home tomorrow. We might have been able to go home today, but he still has some fluid around his lungs and his potassium was low from the diuretic used to reduce the swelling. The current news is that his potassium levels have stabilized and the fluid has not increased, so as long as things stay the same or better, we'll get to go home tomorrow. We had a couple of lovely visitors today, Benny's wonderful babysitter Lily and her father. After five days here in the hospital, we are definitely looking forward to going home. We are at day four of Benny's recovery from heart surgery. Every day he does better and better. Yesterday he had the breathing tube taken out around midnight. The nurse had told us that he wouldn't get it out until the next morning, so my mom had stayed and sent me to get some rest at the hotel with my mother-in-law, Nora. I woke up just after a dream that Benny was healthy and smiling at me, and was just telling Nora about it when my mom called and said that the ventilator was out, and Benny was awake. I could hear Benny making noises in the background. It worked out well that I hadn't been there that night, because it would have been torture not being able to breastfeed him during his discomfort. They finally let me nurse him at 10:30 yesterday morning. It was so wonderful getting to hold him in my arms again! We had several visitor yesterday, including Benny's girlfriend Everly! She wasn't able to come in and see him in person, but she wore her Team Benny shirt in solidarity. Last night I stayed so that I could nurse him as needed during the night. It was a little rough, he has some congestion in his chest that made him uncomfortable, and the nurse tried to pull it out by sticking a tube in and suctioning. He really did not like that. She also terrified me by telling me that if the blood coming out of his chest tube turned cloudy that it would be a sign that he could no longer digest proteins and he would have to go on a low-fat diet. This would mean that I would have to pump and have the fat separated out of the breastmilk before I could give it to him. After months of having to nurse and pump and supplement I was really looking forward to Benny being strong enough to exclusively breastfeed. I started to freak out. This morning things started to look up again as soon as Nora and my mom walked in the door. They both have nursing backgrounds, so know how to read all of the machines and translate for all the medical staff. (I really think hospitals should give out Medical to English language dictionaries for families trying to follow what their doctors are saying to them.) They said that everything looked great, and they were right. Within a few hours the surgeon came and took out the chest tube and pacer wires. (The tube stuck out of his chest to release the blood and fluid coming from the heart, and the pacer wires they leave sticking out of the heart in case the heart doesn't start beating on it's own and needs a pacemaker.) Benny wasn't thrilled about this process, but we were. All he has to work on now is continuing to eat, poop and go about the business of being a baby. As long as he continues to get better we should be out of the hospital in a few days! We are so happy with his progress, this is truly wonderful. Eight months ago when we found out prenatally that our baby would need heart surgery I was terrified. And that terror didn't go away, but continued to boil underneath the surface throughout my pregnancy and the first four months of Benny's life. But as the time of the surgery grew near, an amazing thing happened. People began to rally around me. My sister set up a special Team Benny page on FaceBook. People I had just met asked me how they could help. A neighbor brought over chicken soup in small containers to keep in the freezer. My son's school counselor offered to bring us Thanksgiving dinner. A friend I had just met brought us dinner. Someone I still haven't even met in person set up a meal train for us, and friends signed up. My brother-in-law printed t-shirts with a special heart he designed to represent the four chambers that Benny's healed heart would have, with characters Caspian and his cousins drew sending love to the heart. When I asked people to let me know if they were interested in wearing a Team Benny t-shirt the response was incredible.
So many people reached out and asked me how they could help that I finally realized that they really meant it. So I sat down with my husband to figure out what help we needed, and wrote a blog post on how people could help. In the days leading up to the surgery pictures of people wearing their Team Benny shirts started to appear on our FaceBook page, in texts and emails. It felt like everywhere we looked we were reminded that people were praying for and thinking about us. At home my mother and good friend Hannah had arrived and were helping me keep Benny and the rest of us well fed and the house in order. My stress was slowly decreasing despite my fear of the ever looming surgery date coming nearer and nearer. Yesterday all day I watched and read as people from all over the world sent us pictures and messages letting us know they were praying for us, thinking about us and visualizing a positive outcome for Benny. Our friend Joel is a professional photographer and had taken amazing pictures of our family a few weeks before the surgery. All day he sent us beautiful pictures of Benny looking healthy and happy, reminding us that our baby would be healthy and happy again. And the crazy thing is, all that praying and positive visualization worked. Not only was Benny's surgery a complete success, but the terrible day that I had anticipated for months didn't feel so scary at all. Feeling everyone's love and support for us made everything okay. Sometimes in all of our hustle and bustle it's easy to forget how beautiful life really is, and how wonderful people can be. Today Benny's heart is working beautifully. He is sedated and recovering. Everything is going well, and we are feeling relieved beyond belief. Thank you to all of our friends and family who have supported us through this surgery and beyond. We love you all so much. We are sitting in the waiting room getting updates on our son Benny's heart surgery. So far it's already been a long day. I woke up with the alarm at 4:30 this morning so I could give Benny his last nurse of the day. He was only allowed clear fluids after 5am. At 6:20 I woke back up to my mom knocking on the door for us to get going. Benny woke up and looked around, surprised that the lights were on so early. We sang our morning songs to him and he gave us his usual big smiles. We packed up quickly and drove towards the hospital. The sunrise was beautiful, and Benny was enjoying sitting with his Grandma in the back seat. We checked him in and met with the anesthesiologist, surgeon and nurses. Everyone was very friendly and it almost felt like a big party until it was time to give Benny up. This was one of the hardest moments of my life, watching the nurses walk away with my baby. Every so often we would get news, but the large part of the day was spent waiting. Finally the cardiologist came in and told us that the surgery was a success! They need to stitch him up, so we are still waiting to see him now, but Benny's heart appears to be working exactly as it should now! Thank you to everyone who has prayed, meditated and sent positive thoughts to us over the past few days. Benny will continue to need support as he heals, but the scariest part is over now. We are so fortunate to have had the very best doctors we could wish for taking care of our little boy. I'm just so happy that after so long spent dreading this moment we are finally almost on the other side. :) We have had such a huge outpouring of love and support since Benny was born, it's been amazing. People often say "Tell me what I can do to help." It is not easy to accept help and I often draw a blank. But if there is one lesson that I've gotten from the experience of having a baby with special needs, it is this: Take the help. We are one day away from Operation Day, and I know that once I get into the hospital all of my energy will be focused completely in the present moment of getting through this difficult situation. And I must remind myself that it isn't just a single day of surgery, but long days in the hospital after and weeks and weeks of recovery at home. We do need your help, and we're going to need it for awhile. So here are the best ways to provide support for us during this time, and thank you in advance for whatever you are able to do. 1. Pray, visualize or think positive thoughts. It doesn't matter to us how you pray or what you call it, we appreciate your thoughts and prayers for Benny. There is scientific evidence that praying for someone who is in the hospital can help them recover more quickly and with better outcomes. Your prayers for Benny truly matter. 2. Wear a Team Benny or green shirt on Tuesday, December 9th. We have already been getting pictures of people rocking their Team Benny t-shirts posted on the Team Benny FaceBook page, and it is awesome! It really lifts our spirit to see that people are sending their love and support in this way. Wear your shirt (Team Benny if you have it, any green shirt if you don't) like it's Saint Patrick's Day on Tuesday, and send us your pictures via FaceBook, Email, Text or any way you please. 3. Bring us food and hugs During the many stays that we've already had at the Rocky Mountain Hospital for Children, we've come to realize an important fact. Hospital cafeteria food sucks. When Benny was first born our good friend Todd set up a little food train for us, and it was *so* nice to get those deliveries. Our out of town friends sent food via restaurants, and while we missed their company, it was still so helpful and appreciated. For this next long haul, the lovely Kim Huss set up a meal train you can sign up for here. If you need to send food from afar, you can order gift cards for us from Morning Glory Cafe, Thai Monkey Club or the Pho Cafe. 4. Give Caspian extra love This poor kid became a big brother just weeks before starting middle school. It's the worst! He absolutely adores Benny. This surgery (and the possibility that he could lose his brother) terrifies him. He is in great need of emotional support from friends and family. He will be in Santa Barbara with my sister Leise the week of the surgery. If you're in the area, give him love in person. If not, leave messages of support for him in the comments section of his site, babybenjamin.weebly.com. 5. Buy a shirt or just chip in a few bucks We are already struggling to keep up with the medical bills that have been coming in from the delivery, NICU and two hospital stays we've had so far. We have good insurance, but those co-pays and deductibles add up fast! So many of our loved ones have been asking for shirts but weren't able to buy them from Pork Chop Press in time, or are asking if they can just donate, so we've decided to set up a campaign on booster.com. You can buy a shirt here anytime in the next two weeks, we really appreciate it. We have already received so much support and we are so grateful. This is an incredibly stressful time and I don't know how we would have made it through without the wonderful people who have stepped in to give us a helping hand. Thank you all so much! Today is the first day of Down Syndrome Awareness Month, a fact I would not have been aware of last October. It's only been six months since Down syndrome shot its way into my consciousness. The day after I got the phone call that my prenatal Panorama test results had come back positive for Down syndrome I gave a friend a ride to the airport bus. When I told her the news and mentioned the possibility of termination she said "that would be the compassionate thing to do". A sentiment echoed recently by author Richard Dawkins' insensitive tweet in response to a woman who expressed her "ethical dilemma" if she were to become pregnant with a baby with Down's syndrome. "Abort it and try again." he wrote, "It would be immoral to bring it into the world if you have the choice." It's easy to make statements like this when you have less than a 1% chance of ever actually having to make that decision. When it's a live baby kicking inside of you it's a different situation. Getting a prenatal Down syndrome diagnosis threw me into a moral quandary that I wasn't prepared for. On the one hand, this meant that our child would have at least some degree of intellectual disability. On the other hand, it also meant that our child would most likely grow up to be happy; in a recent survey of 284 people with Down syndrome, 99% reported they were happy with their lives, 97% liked who they are, and 96% liked how they look. I'm not sure what the statistics are for the "typical" population, but my hunch would be that the numbers would be almost reversed. Most of the people I know would not say that they are happy with their lives, or that they like who they are or how they look. Which begs the question, is it more important for our children to be smart or for them to be happy? Which led me to an even deeper question. Why do we have children at all? They certainly do not make our lives easier. These questions sat heavy on my mind as my husband and I debated our situation. Religion makes questions like these easier. Since neither of us is religious, we were pretty much on our own. One Sunday morning I woke up early and in the quiet of the morning decided it was time for some spiritual questing. I got dressed and made my way to the Unity Spiritual Center near my house. The sermon that morning seemed particularly relevant to me. I blinked back tears throughout the service. After it was over I made my way downstairs to find out more about the church. A woman introduced herself and we began chatting. I asked her what she did and she told me that she was a woman's health consultant and used to be a midwife. Suddenly I found myself weeping in her arms as I told her through sobs that I was pregnant and the baby had Down syndrome and a heart defect. She soothed me and told me that it would be okay. She told me that she had only delivered one baby with Down syndrome when she was a midwife. She said that the love in the room when the baby was born was stronger than anything she'd ever felt before. She felt that the reason so many babies with Down syndrome had these heart "defects" was because their hearts were so big and full of love. "If love was revered as much as everything else, people with Down syndrome would be held in the highest regard." she said. It was at that moment that I realized that I was going to keep this baby no matter what. I had already felt that amazing love she was talking about. And why shouldn't love and happiness be held in the highest regard? What else is there? A peace settled over me that day, and continued through my pregnancy. I felt as though my baby was reassuring me that everything really was going to be okay. My baby had a complete av canal defect, which meant that instead of four chambers he only had one. One great, big, open heart. And that great, big, open heart was sending me wonderful, pure love that enveloped me. Unfortunately, my husband couldn't feel the love coming from the baby the way that I did. He struggled with his fears and worried his way through the entire pregnancy. The moment our son was born it all changed. The love Benjamin brought with him burst into the room and filled my husband's heart. It is a strange journey we've had these past few months since he's been born. With the trouble he's had breathing on his own and the heart surgery looming in his near future we live in almost constant terror of losing him. And we still worry about what his future will hold. Despite the uncertainty about what having Down syndrome will really mean for him as he grows up, we have already become Down syndrome activists. This past Sunday we woke up early, packed extra oxygen and drove down to Denver for the Step Up For Down Syndrome Walk. I was both excited and terrified as to what we might find there. Right now Benny is just a baby. He may be a little more floppy and spend more time in the hospital than other babies, but for the most part he's just like most other babies. I knew that seeing older kids and adults with Down syndrome was going to give us a glimpse at what his future might be like, and that could be hard. When we got there I was surprised by how many people there were, and how few of them had Down syndrome. We made our way to the stage near the starting line, and I was just thinking that this was easier than I had imagined when the announcer called forward a young man to sing the Star Spangled Banner. His voice was strong and unmistakably belonged to a person with Down syndrome. The crowd cheered him on even as he struggled with some of the words. A mixture of tremendous joy and sorrow filled me at his imperfect delivery. I tried to hold back the tears, but couldn't stop myself from pressing my face into my husband's shoulder and bawling. True love means accepting things as they are, but that is not always easy. Our society values intellectual ability and verbal capacity above big heartedness and joyfulness. Many people think that it is kinder or more considerate to end a life rather than bring a child with Down syndrome into the world. As a mother I want to protect my son from that world. I want to prove them all wrong, stick a finger in Richard Dawkins' fat, stupid face. But I don't know what the future will bring. I don't know that my son will overcome all of the prejudices against him. I don't know what level of ability or disability he might have. All I know is that for me, I've answered the question of whether it is more important for our children to be smart or to be happy. It is more important for them to be loved. And I do love my son, whether or not he's smart or happy. And that is why I have children. To teach me that kind of love. And if Richard Dawkins thinks that's immoral that's just fine with me, because he obviously doesn't know much about love. I took Anatomy in high school, but I guess I wasn't paying much attention when we learned about the heart. No matter how many doctors I talk to, I can't seem to get a good grasp on my baby's heart defect and pulmonary hypertension. Yesterday my mother-in-law sent a letter to my older son explaining why his brother needs the constant low-flow oxygen he has recently been prescribed. It is the best description I've ever read: Hi again Caspian! I wanted to tell you a story about why your brother needs oxygen, and what the doctors will be fixing in his heart when he gets a little bigger.... Think of Benny's heart and lungs as a little house, with a furnace to keep it warm. It's cold outside, and Benny's little house has a door, and a window, and that furnace. Because it's cold outside, Benny likes, and needs, to have a warm little house. Benny has to go outside frequently to get supplies--food, air, and wood for his furnace. Every time he goes outside, he opens the door and then closes it behind him, so the house won't get cold. But Benny's door doesn't close quite right. The door to YOUR house opens only one way on its hinge, and it closes tight when it closes. Then to open it, it takes some effort.... you have to turn the knob, and pull it open. And when the wind is blowing hard outside against it, even in a storm, the door doesn't blow open on its own. It's SHUT, and shut tight. But Benny's door to his house is more of a swinging door. It sometimes moves BOTH ways, and if there's a big wind outside, the pressure can blow it open and let the cold air in, even though Benny wants his house to stay tight and cozy warm. Sometimes that door is just not tight. Also, Benny's window doesn't quite close. The glass doesn't go all the way down to the bottom--there's a few inches that are always open. The window wasn't measured absolutely correctly when it was made. So cold air is always coming into Benny's little house. That makes the furnace work overtime, and harder than it should. In the real world, Benny now has oxygen--which you can think of acting in Benny's little imaginary heart and lung house as being an extra heater. It takes some of the burden off his furnace in keeping his house warm. It also acts sort of as super fuel for his furnace itself, and protects it from getting overworked. When Benny has his surgery, the doctors will do two things: 1. They will create a bottom to Benny's constantly open window. They'll put another piece of good, strong glass in that window, and then it will shut tight--not letting in any more cold air all the time. When the window has to open, it will open. When it has to shut, it will thus be able to shut. No more always a little open, letting in cold air. 2. They will fix Benny's door. No more swinging open with big winds outside. They will fix it so that it will only open ONE way, and when it closes it will shut tight. When the door has to open to get supplies, it will open, and then shut tight afterwards....not only to not let in cold air constantly, but also to not let those supplies roll away by accident. So then, instead of Benny's little house being cold all the time-- because cold air is always coming in from the window and door that don't shut tight-- thus making his little furnace work so hard, and constantly, to help keep the house warm----with a repaired door and window, his furnace can work normally, like it should, and not so hard all the time. Also, Benny's house will be warmer and more comfortable. Everything will be easier, and more comfortable for Benny, once that door and window are fixed. So until then, the oxygen will help his little furnace--take some of the burden off it by acting as super fuel for it, and also by acting as an extra heater. It isn't heat, though, that's the issue--it's oxygen. Benny's heart and lungs need some help right now to circulate oxygen to his body. Our hearts actually have (what you could call) windows and doors between its chambers (the four "rooms" inside our hearts). They have to open one way, and one way ONLY,and they have to shut tight, and not open up backwards with pressure against them. Those doors and windows are called heart valves. So the doctors will fix up Benny's heart, so that his heart home will stay nice and cozy warm, and his real body will be able to obtain and distribute oxygen well. Then when he gets older, and learns from you and your parents how to run around and ride a bike and swim, his body will have the energy and oxygen to do all that. The doctors know all about how to fix things. Benny just needs to get a little bigger first, before the surgery, and the oxygen he's using now will keep things going okay until that time. You of course can't explain all this to Benny, but when you talk to him,you can tell him that even though sometimes having to have oxygen is blech, it's really helping, and it will be okay. He'll always have someone nearby to take care of him and keep him company. So, big brother--I hope school is fun--your clubs, your friends, your teachers. Send us an Email and tell us when you get a chance. Love, Grandma and Grandpa If things follow their natural course you get to a point where being pregnant for another second seems worse than whatever it's going to take to get that baby out of your body. At least, this was how it was with my first pregnancy. I gave birth 9 days after my due date. The meat thermometer had long ago popped on that turkey, I was very, very done with being pregnant by the time I finally gave birth. This time things were different. They were different pretty much from the beginning of my pregnancy. After two ectopics and a miscarriage that year, we needed serious reassurance that things were okay. So we started out with an ob at a different hospital in a different city than where we'd gotten the bad news on the previous pregnancies. I just couldn't handle going back to the same ob who kept giving us bad news, even though it had nothing to do with her. Just when we had started to feel confident that this pregnancy was going to be okay, we got the terrible phone call. Our 20 week ultrasound had revealed a heart defect, and the blood-work had come back 99% positive for Down syndrome. Things were not going at all as planned. Originally we had planned to transfer to a home midwife once we felt confident that things were going well. With the diagnosis that plan went out the window. After the cardiologist okayed us to go back to our original birth plan, but discouraged us from a home birth, I began researching options. I was delighted when the Boulder Nurse Midwives agreed to take us, diagnosis and all. Since they deliver in a hospital this seemed like a great compromise. Then my 1 hour glucose tolerance test came back high. And so did my 2 hour test. Which meant that I had gestational diabetes. I was so angry. I felt like everything that could go wrong in this pregnancy was going wrong. Despite eating a very restricted diet, which especially sucks when you're pregnant, and taking a walk after nearly every meal, I had several high fasting levels. Since fasting levels are taken first thing in the morning before you eat, there's really no great way to control them with diet and exercise. I eventually figured out through some internet research that eating protein snacks right before bed helps, but the endocrinologist had already recommended insulin. This meant that the Boulder Nurse Midwives couldn't keep me in their practice. I was devastated. Natural birth is important to me. My mom is a nurse-midwife and I grew up with words like "cervix" and "vagina" bandied about the table whenever her midwife friends came over for dinner. My sisters had all had natural births that I had been present for, and I had given birth to my first son naturally. It was a very empowering, wonderful experience that I hoped to have again with my next baby. My biggest fear is having to go into a hospital to give birth and one intervention after another leading to an emergency c-section. It happens all the time. Over 30% of births in the United States are delivered via c-section, a much too high number that reflects the medical mentality that medical intervention now is better than potential litigation later. Being forced to deliver with an OB rather than a midwife put me at much greater risk for interventions, and it was terrifying to me. I deliberated for a week about whether to deliver with a midwife group that could take me with my gestational diabetes, but was all the way down in Denver at the University of Colorado hospital, or if I should go with the obstetrics group and stay at the Foothills hospital in Boulder. Finally I decided to stay in Boulder because I was so uncomfortable in the car already that the prospect of having to drive 45 minutes while in labor didn't seem possible. My sister's good friend Norma had already agreed to come to my birth as a doula, but she had a 6 hour drive to get here, so we also hired a local doula in case she didn't make it. Once I knew I had that support, my stress over the impending hospital birth decreased significantly. The gestational diabetes also meant twice weekly non-stress tests, which contrary to the name are very stressful. You're strapped to a monitor for half an hour to determine if your baby is moving often enough. The baby was often sound asleep, and I would spend the half hour eating ice chips to try to wake him up. In addition I had to get an ultrasound every other week to check for hydrops, a type of dangerous fluid retention that can be more common in situations like mine. It was at one of these ultrasounds that the perinatologist told me that she was concerned that I hadn't felt as much movement lately and the baby's growth had slowed down. She thought that it would be safest to induce right at 39 weeks, which happened to be two days later. It was then that I started to cry. I was nowhere near that turning point at which pregnancy is more uncomfortable than the prospect of labor. It seemed like the entire pregnancy was one medical crisis after another, and now it looked like the birth was going to end up the same way. It was too much. Luckily my doula Lisa Waldo was there, and suggested that I let the doctor sweep my membranes to try to get my labor started. This is an uncomfortable procedure where the doctor sticks her finger through your cervix and removes the membranes above it. Not something anyone would look forward to, but if it worked it would be better than getting a Pitocin drip. I had Max call the troops and let them know labor was imminent. I needed my mother and sisters with me. As much as I hated the idea of induction, having a little bit of a heads up was helpful since they were all coming from far away. For the next few days I tried anything that had been even remotely rumored to help labor get started. Sex, pineapple, spicy food, nipple stimulation, enemas, bouncing on an exercise ball, flower essences, acupuncture...I tried it all. Even if it didn't work, at least some of it was enjoyable. I had been having contractions for days even before the membrane sweep, and they had started to intensify after. The acupuncture I got the next day seemed to kick them into even higher gear. By the time my husband was snoring that night the contractions were ten minutes apart and getting more and more intense. My mom was driving from the four corners area with Norma, my long-distance doula. I was worried that they wouldn't make it in time, and called to tell them my progress so they wouldn't stop for the night. "This is good." my mom said when I told her that I kept seeing bloody show in the toilet and my contractions were getting intense and closer together. I could hear Norma cheering in the background. It takes a special kind of person to cheer over something like bloody show. (Bloody show, also known as the "mucous plug", is just as gross as it sounds. It's the mucous that plugs the cervix up to protect it from bacteria getting in, and it usually comes out right before labor starts.) Finally my contractions got so intense that my moaning woke my husband up. I had been using the ibirth app to time my contractions, and at that point they were about five minutes apart. He called and was told to bring me in to the hospital. At this point I was very glad that I had opted to stay in Boulder. The one contraction I had during the ten minute car ride was so excruciating that I screamed and swore the entire time while gripping the door handle and attempting to raise my body up off the seat as much as I could. I don't know why, but sitting through a contraction was unbearable for me. I needed to be standing up, moving my hips. This was true throughout my labor. As soon as we arrived I had another contraction in the hospital parking lot. We made our way to the emergency room, which was fortunately empty in the middle of the night on a Thursday. Someone brought a wheelchair over and asked me if I wanted to be wheeled up. "No!" I said emphatically and got a startled look. I couldn't imagine sitting when my contractions were starting to come so close together. We slowly made our way to the elevator, stopping for a contraction along the way. Once we got upstairs the receptionist was expecting us and we were quickly shown to our room. The nurse told us she had read our birth plan, and would do her best to honor our wishes, but she was going to have to set me up on the monitor right now. For the next few hours I was trapped near the monitor because my heart rate was too high. The monitoring reminded me of the non-stress tests, which had not always gone well, and I had been told that if the baby's heart decelerated on the monitor that would cause me to have to have an emergency c-section. This in turn made my heart rate go up, which meant that I had to continue to be monitored, a vicious cycle. If they were just monitoring the baby I would have been able to move freely, but the blood pressure monitor for me only had a few feet of slack. Luckily my sisters had arrived, and my mom and Norma soon after. My oldest sister Leise got to work decorating the room with tapestries and christmas lights. Norma put my birth playlist on, and she and my sister Josie danced next to the monitor with me, laughing at the appropriateness of the lyrics to "Push It". Every few minutes a contraction would hit me and I would grab my sister around the shoulders while Norma pushed on my back and helped me rotate my hips. My local doula Lisa had another woman in labor in the room next door, so it worked out perfectly that I already had so much support. She came in and out throughout my labor, and also called in her partner Sarah Boccolucci, who took the beautiful pictures and video that inspired this post. What this meant was that I had three doulas helping out during my labor in addition to my two sisters and my Nurse Midwife mom. And of course, my husband Max, who was my rock throughout. I felt so supported and loved, which turned out to be just what I needed. We waited for hours for the obstetrician on call to show up to say if I could come off the monitor, but she never came. In the meantime the nurse seemed to be increasingly distressed by my refusal to let her put a hep lock iv in. Later I would read my report and laugh at the description of me refusing the iv against medical advice because I have "big veins". I guess I really did say that. And I have no regrets. The last thing I wanted was to have a needle poking into my arm while in labor. After awhile the nurse said she could monitor my blood pressure intermittently so that I could have more slack. I took advantage to take a little walk in the hall and a lovely bath, with low lights and lavender bath salts. At last Dr. Shimoda arrived with the day shift and released me from the monitor. I was so glad she was on call that day. She had been the doctor we had interviewed when trying to decide whether to go with the ob group in Boulder. We had explained our desire for a natural birth, and asked questions about every possible scenario. Her straight forward answers and sarcastic wit had won me over. I knew she would stay out of my way unless I needed her, and I trusted that if she recommended an intervention it would be because it was necessary. Unfortunately the bath had worked too well to relax me, and my contractions were growing further apart, though still very intense. I reminded myself not to worry about it, but to be grateful for the break. I took the opportunity to eat some protein and rest, which my body craved. After awhile Max suggested we take a walk to get some fresh air. I couldn't leave the floor, but was allowed across the hall where there was an outdoor balcony. My acupuncturist, Monica Edlauer, found us there. We had made an appointment for her to come to the hospital that morning when we thought I was coming in for an induction. It turned out to be perfect timing. Each needle she put in seemed to bring my contractions closer together. By the time she was done I was in very active labor. Every contraction I felt that I needed to hold on to something above me and squat down. I had been using Max's shoulders for this, but I could tell he was getting tired. Lisa was there and suggested I try holding on to the top of the bed in a kneeling position. It turned out this is just what I needed. I felt the baby drop down, and a few contractions later my water burst with an amazing intensity. The nurse called Dr. Shimoda in to check how dilated my cervix was. "10 centimeters!" she said to my relief, "You can start pushing." This was the part that I had known was coming. It was the most painful part, pushing the baby out. "Don't fight it!" my mom said, "push into the pain." I had heard the rumor about ecstatic birth. These are women who experience pushing their babies out as one giant orgasm, and scream out of pleasure rather than pain. I decided to imagine that the pain I was experiencing was pleasure. I had used this technique to psych myself up for going to the hospital. By telling myself I was going to a wonderful hotel where all of my needs would be taken care of I was able to overcome my anxiety about having a hospital birth. So I told myself that I was about to have a giant orgasm. Lisa said "Breathe out fear, breathe in love", and I repeated this to myself as I imagined the pleasure I would feel as I pushed the baby out of my body, and the enormous relief once it was out. I screamed an enormous scream as I pushed as hard as I could through the next contraction. "Try to bring your voice down lower, push the baby towards your bottom." Lisa said. I focused on my breath, and the orgasm and the relief as I bore down during the next contraction. "I can see the baby's hair!" Max said, lifting my spirits as I knew that meant I was close to done. There was a nice pause before my next contraction, and I let myself relax against the bed until the next contraction began. The next contraction I thought "Open, love, orgasm, pleasure" as I pushed the baby's body out slowly, the pain increasing until finally he slipped out and there was a collective cry of amazement simultaneous with that great, wonderful relief. It was over, I made it through, I was on the other side now. Everyone exclaimed with joy at the sound of the baby's first cry. "It's a boy!" Max told me, and slipped the baby through my legs so I could see him for the first time. "Be careful, his umbilical cord is short, he'll have to stay down here on your belly." my mom told me as she helped me turn over and lie down. Dr. Shimoda congratulated me as she waited patiently for the cord to stop pulsing. I examined my baby as best I could, noting his perfectly formed fingers and toes, his cute little nose, and tiny ears. Max had been designated to cut the cord, and when it came time Dr. Shimoda talked him through it. The special care nurse we had met the week before was there. "We're just going to take him for a moment and give him some oxygen." she told me gently. Max followed her over to the warmer while Dr. Shimoda focused on me. "Are you feeling any cramping?" she asked as she tugged on the umbilical cord. I wasn't. "Can we give a small shot of Pitocin?" she asked, and explained that she was worried about hemorrhaging. Dr. Shimoda and I had a deal that if for some reason the baby had to be transferred down to Denver, she would release me as long as I had a normal vaginal delivery and was in good health. I had managed the first part, and didn't want to mess up our agreement by hemorrhaging. The nurse came and gave me a shot, and soon I pushed out the placenta. It was just a little sting, nothing compared to pushing out the baby, but it was still a relief when it was over. The special care nurse brought the baby over and handed him back to me to hold. "He needs a little bit of help, so I'm just going to keep this oxygen here." she told me as she held a plastic contraption near his mouth. I offered him my nipple and was ecstatic when he took it and began to suck. I had read that babies with Down syndrome have a hard time nursing. Not only that, but babies with congenital heart defects also have a hard time nursing. Since this baby had a double whammy, I had worried that he wouldn't be able to breastfeed. I had also worried that the joy of birth would be dampened by seeing the signs of Down syndrome in the baby's face. Max had been prepared that he might only see Down syndrome and not the baby, and had given himself a few months to learn to love the baby despite his diagnosis. This turned out not to be a concern. We were both immediately smitten with our baby, and neither of us saw Down syndrome at all. I even wondered at the time if there was a possibility the diagnosis had been wrong. Later it would be confirmed, and looking back at the pictures I can now see the signs of Down syndrome in Benny's newborn features. But it doesn't matter anymore. Now that we can hold him and see how wonderful he is, the diagnosis doesn't hold such huge anxiety for us. It's just a little part of who he is, like his red hair and his sparkling blue eyes. Those first few moments after the birth are what made all the pain of natural childbirth worth it. Holding my son skin to skin and looking into his eyes with the heightened love and joy of all that we had overcome and been through together is one of the most amazing and memorable moments of my life. I would never want to have numbed that. Without drugs in his system his natural instinct to breastfeed kicked in, giving us the advantage that we needed when over the next few hours it was determined that he needed extra help breathing and was put on a respirator and transferred down to a NICU in Denver. Thankfully, Dr. Shimoda kept her promise and released me from her care so that I could accompany him down to Denver. We weren't allowed to feed him for over 12 hours. Luckily, when I was finally able to put him to the breast, he remembered what he had learned in those first few moments, and was able to breastfeed successfully. After only four days we were able to bring him home from the NICU. We hadn't found out the gender of the baby ahead of time, and hadn't settled on a name either. So it was a week after he was born that we finally settled on his name. Benjamin, for three important people in Max's life: his close friend who had been charismatic and kind before he passed away too young; his grandfather Benny who had loved his family and his career as a violinist in the New York orchestra; and his Great-Uncle Benjamin, who broke boundaries and cultivated tolerance as the conductor of the first racially-integrated orchestra in the United States. That we would wish our child to be charismatic and kind, to love his family and his career and to break boundaries and cultivate tolerance seemed very fitting. And that is the story of how our baby Benny came into the world. |
Archives
April 2022
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
All
|